Hello rabbit hole

Alice in Wonderland syndrome… could it be I’m getting that all the time now? And that is what is causing the vertigo, the extreme visual issues?Below is taken from an article about a woman who has Alice in Wonderland complicating her chronic silent migraines. And it sounds a lot like me. If all the aura symptoms I had when I was younger and the AiWS I had them mean I too had silent migraines… then that makes a great deal of sense. I was getting AIWS in me morning but never though it could be like this in the day. If I think of it that way… well hell it explains a whole damn lot. It would explain at lot including the sudden increase in the visual aura symptoms. Because some would be my normal peristent migraine aura and some would be the funky AIWS distortions. I’d mention it the neuro but honestly he would just brush it off like the visual snow.

I am going to make a detailed list of the aura and vertigo symptoms I am having, specifically by name if I have to research every damn one of them.. listing which ones are always there, which ones occur with a migraine, and which ones occur without a migraine and take that to my doctor. So they can grasp how compramised my vision had become. I will recomend they stend me to the Irlen Institite to see if they can help. And I will get my eyes checked again to verifiy they are physicall fine. Enough of this crap.****I had no pain but I felt really dizzy and unable to focus. I had a feeling of terrible pressure, and blind spots in my eye. ‘All I wanted to do was sleep, not because I was tired but because it was the only way to stop the symptoms. ‘When I went back to work the next week I felt OK, but then it started again.’‘Within about two months I was feeling so dizzy at times that my eyes went from side to side as if I had been on the waltzers at a funfair. ‘I looked drunk — I had to hold on to the filing cabinet to get the next patient’s notes.’One of the most worrying symptoms was the visual disturbance. ‘I have three degrees and speak French fluently, yet more and more frequently I found it impossible to read, as if my brain was no longer able to decode the squiggles on the page,’ recalls Sharon. ‘And then not being able to recognise faces was scary, really scary. ‘That day at the nursery, a few months after the symptoms first started, was frightening. I thought I had a brain tumour.’Within two months Sharon had stopped working because she was forgetting key information and even telephone calls she had taken. She saw her GP, who thought the problem was due to bad posture. Sharon wasn’t convinced and arranged MRI scans, as well as seeing ear, nose and throat specialists and even a neurologist privately, but they could find nothing wrong with her.

This can lead to so-called Alice in Wonderland syndrome.‘This is most common in migraine, but is also occasionally seen in glandular fever or epilepsy,’ says Dr Silver. Symptoms include distortion of time, where everything slows down, feeling the wrong size compared with your environment — for example, the room looks four to five times too big or a person in the street looks tiny — or other, very vivid hallucinations. ‘It relates to brain dysfunction, but we know no more,’ he adds. ‘People with migraine like this are often highly motivated and focused, want to do everything for everyone else, are very successful, and have to have everything just right.’ It’s not uncommon for doctors to misdiagnose these forms of migraine, he says. ‘Often the doctor will suspect it’s a psychological disorder, as the patient has a long list of symptoms yet nothing abnormal shows on examination. Some doctors will conclude it is all in their mind, which is something I have a real problem with.’Indeed, doctors say it is impossible to know how many have Alice in Wonderland syndrome because patients will hide their symptoms for fear of being thought of as psychologically disturbed.Dr Silver says patients who have migraine should avoid all caffeine and medications and follow a healthy lifestyle with plenty of sleep.

Just because disclaimer

This blog is not a substitute for medical advice and serves only to help you to be your own advocate and to make migraine disease more visible and understood. Please do not claim the information on this page as your own, and acknowledge the writer accordingly.

Nothing I say is medical advice or treatment or is a substitute for medical advice or treatment. Seek out medical advice to learn more about your migraines, chronic illness, asthma, and/or any other random medical condition I have or talk about.